Monday, 27 February 2017

Due to a combination of a tricky weekend and dodgy laptop I'm late to respond to the recent YouGov poll of over 800 teachers which was published in The Guardian this weekend. (As laptop isn't working and blogspot's full potential cannot be reached on an iPad I can't add a link, but will edit this post as soon as I can to do so).

As I read the article, whilst choking down a cup of tea, I hastily wrote a speed-rant on Facebook which went something like this:

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OK, brace yourselves for another lecture (or ignore, because it's easier to stick your head in the sand and deny the struggles that so many people go through every day because I'm alright Jack!).

A very distressing article to wake up to, a poll by teachers about special needs in school.
According to a YouGov poll, parents are pushing for special needs diagnoses for their children.

Any of us in this position knows how difficult (and for difficult read heartbreaking, hair-tearing-out sheer bloody frustrating) it is to get your child's difficulties recognised in school, almost to the point of it being a deliberate ploy on the school's part to hang on to their precious cash (and who can blame them when the government keeps taking it away from them!), but the only loser in this case is the child, who without their needs being recognised and supported cannot reach their potential.

Teachers are held up as the ultimate child experts, and as such, this article and the unfair statements within will be held up as Truth, carved in stone, and proof yet again of pesky parents trying to find an unfair advantage for their little darling (for heaven's sake, can we not call children thick anymore? Do we have to "label" everything?).

So I thought I'd put a few things straight. If nothing else it'll ease my mind.

Parents work on the assumption that assessment and diagnosis will bring timely support. This is because too often an undiagnosed child will have zero support whatsoever. You have to have a diagnosis (particularly when it comes to invisible disabilities like autism and ADHD) before anyone will take you seriously, or the child is treated as naughty, and parents are treated as poor weak saps, allowing their child to manipulate them.

Parents think people will be less judgemental of a child's behaviour, and their parenting skills? No. Parents know that ignorant people will still judge to the pits of hell, we put up with it from all sides until you withdraw for your own protection. A diagnosis brings with it peace of mind that enables you to grow a thick skin to ignore said ignorant comments.

Other parents want to avoid the stigma of a special needs label? Yes, because they're thinking about themselves and not what's best for the child. Yet this allows the stigma to continue, when it really shouldn't. This is being written on an iPad, whilst reading the article in question on a laptop, technology which is almost certainly invented in companies with high rates of autism. Why is there still a stigma when some of the greatest scientific and creative discoveries are by autistic people? As Temple Grandin once said, without autism, humans would still be sitting at the back of a cave banging rocks together!

Teachers believe there are many misdiagnosed children? Well what a surprise! To be fair, teachers are not paediatricians or autism specialists, it shouldn't be in their remit to judge whether a diagnosis is accurate or not, they simply don't have the experience or qualifications to make those judgements, and when the autism spectrum is so wide and varied, they tend to fall back on basic, stereotypical knowledge in order to make their judgements, and because the world at large also falls back to these judgements, those of us affected by these unfair opinions that come from a comfortable place of ignorance are stuck in a hard place. Do we give up? Do we continue to push knowing that we are placing ourselves in decidedly vulnerable positions?
There's also the little point that diagnoses aren't handed out like smarties. The process to diagnosis is horrible, traumatic, distressing, you don't choose to go through that unless you feel there is a genuine need.

A classroom solution is better? Ah yes, the classroom solution that ensured my son felt suicidal. A solution that meant, after only a few short weeks at secondary school, my son was too anxious to go in? Yes, that sounds like it's working, doesn't it?

Suggesting that private ed psych assessments mean that wealthier parents are at an advantage? Yes they are, but this doesn't mean their child doesn't have needs, it just means that yet again the poor will be at a disadvantage, because their children are at the mercy of LA ed psychs who are well known to assess in favour of the local authority's coffers and deny any difficulties, or not have the experience to spot more complex presentations.

With articles like this there will be a greater divide between teachers and SEN parents, but it's the child who will be the biggest loser. An unsupported child will grow into a disengaged adult, an adult more likely to have chronic mental illness, an adult likely to have fewer qualifications, an adult who has gone through the school system knowing they are crap, because no-one has seen how important it is to recognise who they are and support them adequately.

If schools were supporting these children well, as this article suggests, why then are so many pushing and pushing for assessments? If our children were supported there'd be no need for us to do this. We only push because it is the only way for our children to be helped, although in our case, most teachers must have assumed he was misdiagnosed because no-one would do a thing to support him. Isn't that shocking? And we're not alone.

I imagine if YouGov did a poll alongside of parents experiences, it would tell a very different story. In fact I might contact them to ask them to carry out a poll, to even the balance.

For children with invisible disabilities, school is not some rose tinted place where teachers are falling over themselves to support them, more often than not the opposite is true.
There is loads that could be done to help, things that wouldn't cost the earth, but the rigid, OFSTED led structure means that pupils are increasingly unable to cope, but the system doesn't care, even though arguably many of these children will shape the future's technology, art, film and music.

Everyone needs to know that disabled children are not in education utopia, despite what we are told!

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Having had the weekend to mull over it, whilst spending most of my time dividing and conquering children I have been assured by teachers are fine, I have more to add.

Sadly I'm not surprised by this weekend's revelations. The figures confirm my suspicions given the support (or lack of!) that my children Brian and PDA boy received over the last ten and five years respectively. And given the countless fob offs we were given for both boys whenever we expressed any concerns, and to that you can add a year of fobbing off for my youngest too. In one family that's sixteen years of what I would consider to be poor treatment and denial of any needs. If I added incidents from other families in the area we could easily be heading for at least a century, if not more, in total of crapness from our local schools.

I'm kind of in awe at the sheer arrogance displayed by the small majority (57%) of teachers questioned who believed children in their care were misdiagnosed, and baffled at the point of the poll. Asking people questions that they are not qualified to answer then publicising this information as meaningful is extremely damaging, particularly to children with invisible disabilities.

Over the last five years it has struck me how very careful people are not to tread on teacher's toes. From our GP through support workers to psychologists and paediatricians. All extremely cautious in their wording of reports so as not to offend, to ensure teachers are kept in the loop, keen to make sure the teachers have been listened to (a little too much in our case!). It's a given that teachers are the education experts, and I have never seen anyone openly question that, even when it would have been entirely appropriate.
Over the same time period though, it has also been noted that all but one of PDA boy's teachers have ignored his difficulties and his eventual diagnosis. That's a lot of teachers assuming they know better than an experienced occupational therapist, consultant clinical psychologist and consultant paediatrician. That shows a lot of balls, and highlights a mystery - how the hell are they getting away with this blatantly shoddy approach to our precious children? Not only are parents being ignored, but people who spent years gaining qualifications to enable them to accurately diagnose our children.
It must also be noted that on the several support groups I'm a member of, mainly online, one of the most reoccurring issues for our children is school, with the same themes being repeated again and again; parents not being believed, appropriate support difficult to come by, and suggestions that parents are to blame. These are not isolated incidents.

Throughout the years, when it comes to neurological disabilities, it has become tradition to blame parents, usually mothers.
We've seen the refrigerator mother theory (cold mothers not giving their children enough love and affection), more recently there seems to be a fashion of diagnosing attachment difficulties, even in absence of any evidence of neglect. We see accusations of fabricated and induced illness (Munchausens by proxy as it was formerly known), particularly in families with autistic mothers.
So we really should have expected this, just another finger pointing at us bloody pushy parents because, well, how fucking inconvenient are we? How selfish of us wanting the best for our children, and wanting their difficulties to be identified so they can be better supported, how bothersome of us to feel anxious when we are ignored, and troublesome that we would like to be listened to and believed.

I'm not surprised, but I do feel a deep tiredness as the article, or more specifically the poll, has neatly spelt out that for so many families this is the beginning of another round of misunderstandings, miscommunications and a whole load of ignorance.
We need a break.
I don't know one parent of an autistic child who isn't exhausted. Exhausted from never being able to relax, but also because so much of our energy is wasted on schools, and we now have clear evidence that their opinions of us are as low as we suspected. I know we are no longer in the system with PDA boy, but it's still recent enough to still be raw, and not all parents are able to home educate their children, so are still having to face these same difficulties.

I'm saddened that a newspaper who only recently ran an article highlighting the unfair difficulties with services that so many autistic mothers have (link will be added as soon as I can), can publish this article based on a poorly formulated and biased poll whose only purpose has been to highlight a poor attitude towards SEN from many teachers, and shows a great need for better training, and possibly a word or two about professional conduct and the inappropriateness of disregarding information from highly experienced and qualified experts.

So there we are. Late to the party, but feeling a lot better to have that off my chest!
Thank you for reading.

Thursday, 23 February 2017

Appearing to be ok is what PDA boy does. But contrary to other's opinions, looking carefree and relaxed does not mean this is what he is feeling inside.
He may be enjoying himself, but if you're seeing a perfectly behaved, well mannered boy, you are almost certainly seeing an elaborate act, not a happy contented boy.

I have been told so many times that my son's behaviour when he's with others is a mark of success, how well my husband and I have done, but I see it a different way.

What tends to happen if he spends time away from home, and I'm told how well he's behaving is as follows:

For a start, I find it very difficult to shake off the feeling that I'm being told it is me that's the problem, even though by now we know beyond shadow of a doubt that that's not the case. This is something I need to work on.

I feel the need to explain that he's masking, I'm not quite sure why I do this, it's perhaps a reminder to myself more than anything else, because others certainly don't seem to understand what I'm saying or why I feel the need to say it.

I feel a flash of resentment (that I immediately quash), because these people who rarely see him are having lovely, relaxed times with him.
But then I feel bad because I realise that it's them having the relaxed time, not PDA boy, who is likely to come home angry and needing to let off steam as he is stressed at having to hold everything in. Don't get me wrong, he will have been having a fun time, but at the same time the effort that goes into complying, being polite and not swearing, having the right facial expressions etc is exhausting.

I feel a weariness of what will happen when he comes home. It will be difficult. And no, I'm not being negative when I say this, after years of experience, we know that we will have to be prepared to allow PDA boy a great deal of leeway when he arrives back at home, and be open to treks around the village at 10pm to help him to settle, or cake baking, knowing full well that following a recipe is a demand and PDA boy will always deviate from this and add interesting ingredients, such as vinegar or onions, rendering the resulting mess inedible. We know there will be a few days like this as he recovers from a visit.

If I talk about this, others will put a positive spin on things. It's great that he is able to mask so well, it means he will certainly cope in the real world because he can control it, it means that my husband and I have done really well in making sure he can appear to be neurotypical. Being able to mask is seen as a sign of success. Yay, he's cured, if only for a few hours at a time, but, well, yay, let's celebrate it.

But we don't feel like celebrating it. We feel that the very act of masking is likely to mean that PDA boy is less likely to succeed in the "real world" (whatever that is).

PDA boy is very socially aware, and as such he is aware of the fact that, compared to others his age, he is different. He is aware of the way people who are different are treated. Whilst his teachers couldn't "see" his autism, it was obvious to his peers that there was something, so PDA boy built up a persona that was acceptable, cool even, which confused his teachers, confused his observers, confused CAMHS, confused us at times.

The main difficulty PDA boy has as a direct result of masking is not being able to advocate for himself at all when in school or visiting a friend. If he's unhappy, or angry, or even feeling ill, he cannot tell anyone but very close family (which means me, my husband and probably his sister) which means he can be reluctant to socialise. We have had small breakthroughs where he has broken down during a meeting at school, and because I was there to ask the right questions, he was able to nod or shake his head and in that way was able to show someone else how bad he was feeling, but I don't think this would have happened had he seen them alone, this made him feel anxious to leave me, I think in a way I became his interpreter.

This worries me for his future, because he will literally look fine in some very tricky situations, and the first anyone will know that he's not is when he refuses to do it again. I'm hoping that the next few years will provide opportunities to work on this, because it does concern me that any jobs he may have could break down with few warning signs. It's important that he learns to admit when something isn't working, or is making him uncomfortable, because without that skill it will be very difficult for others to understand how to support him.

I'm sure I've said this before, but one of the main problems we encountered with CAMHS was their judgement that OK in school = ok everywhere, and that clearly the problem lay with parenting because the problem was at home, not school. They felt we should bring our parenting in line with school's methods, even though we could see how much they were damaging the poor boy. They showed no understanding of masking and how it can affect someone. To them appearing to be fine was a sign of success, it meant there was no issue, the boy has obviously learnt to cope, when in actual fact masking directly led to the breakdown that meant we had to take him out of school.

My older son, Brian (not his real name), also masks, and has the same problems advocating for himself. This, alongside suspected OCD, has led to him being very reclusive. He worries about eating things that other people may have touched, and knowing that in a situation where he is visiting he will be unable to turn a meal down, because he feels it may be perceived as rude, he now refuses to visit at all, because he feels his inability to say no will mean he eats something that will make him ill.

PDA boy's masking led to problems in school. Because he had to keep up his image, he couldn't use the reasonable adjustment offered, as it would have marked him down as different. When the stress of daily life became too much and his mask started to slip, he did the only thing he could to prevent others seeing this different side, and he refused to go into school. The anxiety of keeping up appearances knowing that this was becoming an impossible task meant he was simply unable to go in.

For so many, an autistic person managing to appear "normal" is seen as the optimum outcome, we see this clearly with therapies such as ABA and the willingness of some parents to put their children through dangerous "treatments" which promise to cure the child. But masking, being able to keep up an act of not being autistic leads to chronic mental health problems, intolerably low self-esteem as the person is led to believe that they are not good enough as they are.

Masking is not success.

Masking shows a failure in society, where many people cannot be their true selves for fear of rejection.

I don't want to be congratulated on having a son who cannot tell others that he'd rather not have baked beans, or that he needs the loo, where is it please?

In the few weeks that PDA boy has been out of school, I have noticed that he has started flapping again. Not much, but in happy moments it is starting to happen, and that makes me happy. A small sign that he's allowing himself to him again. He's more relaxed in selected others' company, and being far more chatty, and telling rambling jokes with no punchline, a sure sign that his confidence is starting to creep up.

As this continues we will be visiting these people more and giving PDA boy more chances to speak out for himself.
This will require an element of training for these people too.
Let's imagine you are offered a biscuit. You turn it down. For the most part the person offering will not stop there, they'll carry on with "are you sure?" "Go on, one won't hurt" and all manner of quizzing and persuading takes place. For PDA boy this is a nightmare. If he's said no he means no, and anything beyond an "ok, well you know where they are if you change your mind" makes him feel stressed, makes him doubt himself, and stops him from advocating for himself, because these common responses mean he hasn't been listened to, mean his opinion is wrong, even over a simple biscuit.

It's going to be a learning curve for everyone involved, but I'm confident that, given the space, patience and time, we will slowly help PDA boy to learn that his feelings and needs are worth voicing.

Sunday, 19 February 2017

Things are difficult at the moment, not so much with PDA boy, he is happier since being taken out of school, but his older brother isn't ok at the moment and I'm finding lack of alone time tricky.

This week has seen meltdowns from both me and my oldest, and times where I feel I have hit rock bottom (although at some point I'm sure I'll look back and see it in a different light).

We're not sure what has led to this, but having spoken to my husband I have a few ideas.

Our oldest (I think I've mentioned that his nickname at home is Young Brian Blessed due to the booming quality of his voice!, so for the purpose of this blog, I'm going to call him Brian) most probably has PDA too. We only recognised this after I attended a presentation by Dr Hilary Dyer (an ed psych who specialises in PDA). Until then I assumed that PDA was synonymous with violence, and Brian, although he can be verbally aggressive, is not violent at all.

We have years of evidence of something being different, but never quite enough evidence to do anything about it, and like so many parents' experiences with schools, we were assured for over ten years that Brian was lazy or simply being a boy, and we didn't know enough to challenge that.

We noticed several things from an early age which we attempted to share, but were dismissed (familiar territory!).

He couldn't wear certain clothes, anything too "hard" or with buttons was out.
He lined things up (even potatoes at one point)
He couldn't join in at parties, he would be the child playing with toy tractors in the corner as other children were playing games.
There was evidence of processing differences, if he was given too much information he couldn't retain any of it, he had difficulties reading, which we were assured was pure laziness in his part and lack of effort on ours.
He found writing and using cutlery difficult, which we know now to be indication of fine motor issues, at the time we were blamed so often for not teaching him these vital skills.
He could identify car makes by their wheel trims and lights from a very early age (age 2 if I recall correctly), now at 16 he can tell you the year a vintage engine was made by the shape of specific small parts, yet his reading skills are still lagging.

Since he has been out of school, almost a year now, we have been able to see more and more clearly the things he struggles with, the things we spotted as a little boy have carried on and, if anything, have intensified. Wearing limited garments has become having only two sets of clothes he can wear, if we buy new tracksuit bottoms it may take months before they are an acceptable item to wear regularly, as they don't feel right. The phases of making noises continue, and recently have become much worse which has prompted him to ask us for help, which we will do our utmost to do, starting with a visit to our GP and a possible referral to see if a diagnosis can be made and appropriate support put in place.

I suspect that the recent intensification is down to PDA boy being at home all the time, they don't get on, both have a love of practical jokes and insults, which neither enjoy being on the receiving end of, so life at the moment, when they're together, is an endless loop of doom (description of which can be found in The Asperger Children's Toolkit by Francis Musgrave), this means that everyone's nerves are frayed, including the two boys, who seem unable to stop this endless cycle of wind ups and meltdowns. When my husband is at home we can divide and conquer, when he's at work we do what we can to survive the day.

My own mood does not help things. I am now a week into a lack of sleep phase. Bedtime arrives, all is quiet in the house and my brain wakes up, having been sluggish and unable to function efficiently all day, all of a sudden it is capable of mental acrobatics which means I cannot switch off. When I eventually sleep it's not long before my brain is nudging me again, urging me to dwell on anything and everything that may have happened, or might happen at some point in the future, or, realistically, will never ever happen, yet it requires hours of hyperfocus and leads to me being chronically tired and snappy.

In the middle of this, it's difficult to see any way out, the future is bleak. Hopefully though, there is always an end to these difficult times, and life will shuffle itself back to being manageable again.

We do have plans to help us all to recover from this.

The main one is a sharp word with myself, reminding myself that Brian is not doing this on purpose, something is triggering this, and we will find solutions, it may take a little while, but it will happen. When in the midst of constant fighting and meltdowns it's too easy to lose sight of this, and this week I have definitely been guilty of assuming his behaviour is deliberate.

Another is to try to make sure I have some time out for myself. When I am tired, overloaded and anxious, I am not capable of remaining calm and patient at all times. Over the years it's been assumed that I am lazy, as I have always had a need for down time. Being diagnosed as autistic and having the opportunity to read others' experiences of how autism affects them, I have come to realise that I am not lazy, and I will no longer accept this as a criticism. My need for silence and alone time is crucial to my wellbeing, without it I simply cannot cope, I feel anxious and exhausted constantly and my sensory issues, particularly with noise, become more acute. I have ways of managing this which help to get through these difficult days, but on the worst days I forget that there are things I can do, so my plan is to make myself a checklist, and encourage the boys to make their own lists, of things that can help us to feel calmer and less disagreeable.

Another way to help the boys and me to understand and manage energy levels is The Spoon Theory (My laptop has died and I can't insert a link, but if you want to have a look at Spoon Theory, google The Spoon Theory by Christine Miserandino). Knowing you are having a day when you are short of spoons means you can plan the day accordingly, or fit in activities that add spoons to your limited collection, and for this reason, for me, I must add quiet time to my list of necessary activities. On PDA boys' spoony activities are proprioceptive pursuits, things like trampolining, chopping wood and digging all help him to feel calmer and more able to regulate himself, on Brian's list, watching The Big Bang Theory and not having PDA boy anywhere nearby allows him to relax.

There are times when I need to talk to people who understand our lives. People who will not judge, or suggest the same old parenting strategies that may work for neurotypical children but certainly don't work for PDA boy or Brian. There are several online support groups which are fantastic for this kind of thing, on Facebook and certain parenting forums, kind words and advice on tap, as well as friendly reminders that the actions are not intentional.

Rough times happen, but we do get through them, and with hindsight they give us chances to hone our skills at problem spotting and working out fresh tactics to help us get through the next testing times. We also need to remind ourselves that as time passes so do the challenges we face, but hopefully we'll get quicker and more effective at adjusting our lives around PDA.

We're not quite through this patch yet, but having the chance to talk things through with others and working out a plan of action helps us to see a way out of it and a chance to work towards some better times.

Thursday, 9 February 2017

This is a Facebook awareness "game" that has slowly been doing the rounds over the last few weeks. I found the following in my messenger inbox this morning, having responded "eh?" to a friend's post claiming "I just peed myself!":-

You shouldn't have liked or commented on my last status hahaha. Now you have to pick from one of the below and post it as your status. This is the 2017 Autism Awareness game. Don't be a spoil sport. Pick your poison from one of these and post it as your status.
1. Just found a squirrel in my car!
2. Just used my kids to get out of a speeding ticket.
3. How do you get rid of foot fungus?
4. All of my bras are missing!
5. I think I just accepted a marriage proposal online?!
6. I've decided to stop wearing underwear.
7. It's confirmed I'm going to be a mommy/daddy.
8. Just won a chance audition on America's got talent!
9. I've been accepted on master chef.
10. I'm getting a pet monkey!
11. I just peed myself!
12. Really thinking about getting butt implants!
13. Just won 700 on a scratcher!
14. We're moving to Vermont at the end of the year!
15. Mayonnaise on Reese's peanut butter cups is sooo good!
16. I've just been accepted on come dine with me whoop whoop.
Post with no explanations. Sorry, I fell for it too. Looking forward to your post. Ahhh don't ruin it. (Don't let the secret out). And remember it's all for the 2017 Autism Awareness. Have fun! X

Needless to say that I am a spoilsport and I haven't shared one as my status.
I also haven't shared a ❤️ for breast cancer prevention either, which probably doubly makes me a spoilsport.

I don't think I'm alone in wondering how on earth these games, which are not my idea of fun, raise awareness for the various conditions they are tediously trotted out for. Not one of the phrases says anything about autism, there is no educational purpose, they don't raise any money for any autism charities (and if they did, it would be for Autism $peaks). There is no purpose in them at all, apart from perhaps making the person sharing these statuses feel that they've done their bit for autism.

Instead of inane sentences, it might be more useful to share useful snippets of information to educate, something like:

Autism is a neurological, developmental disability, not a condition caused by parenting.

Autistic people often mask, so you may not know they're autistic.

You cannot see that someone is autistic.

Meltdowns are not tantrums, they are not a sign of bad behaviour and shouldn't be punished.

Except, I see these sort of quotes on autism pages every day, and they're not interesting enough for people with no link with autism to share, there's no amusing angle with an informative caption, as opposed to engaging with a caption that catches others' attention, gives fleeting thoughts about autism for as long as it takes to type "Just found a squirrel in my car!", but which actually does nothing to change the challenges so many autistic people face every day.

Saturday, 4 February 2017

The decision to remove PDA boy from school was a tough one.
Being completely honest, the thought of willingly keeping him home gave me many sleepless nights, my gut was telling me that this would be the best thing for him, but at the same time I also worried that it would be the unraveling of me.

The last few years have been incredibly difficult, the constant battle for support and trying to work with people who were unable to understand has taken its toll on all of us. PDA boy has spent the last few months in a state of constant anxiety, which for him means anger, meltdowns and very volatile behaviour. There was every chance that this behaviour would continue at home, and this terrified me.

In the last few years my need for time out to recover has increased dramatically, I need to set time aside in order to be silent, in order to tidy up my frayed nerves, in order to prepare myself to be a decent mother. I've had a constant battle going on in my head where the logical side, that knew that PDA boy would never thrive in school, would be more likely to go off the rails dramatically, was being drowned out by the emotional side, which told me that I wouldn't cope, I wouldn't keep up with his pace and his high level of demands.

I'm happy to report that I was wrong (perhaps a bit presumptious to state this only two weeks in, but if it all goes tits up at least I can read back and remember how happy things were, if only for a while!)

Two weeks in have seen the following changes.....

PDA boy's rate of swear words per minute has reduced. Quite a feat, considering his fluency with regards to swearing.

We are able to use PDA strategies all the time, and they are working. Now we are no longer managing the after-effects of a day at school, giving choices, tweaking our language and reducing demands, alongside introducing a sensory diet, means that PDA boy, for the first time in years, is mainly happy, and you have no idea what a relief this is!

When at school, we had to deal with PDA boy's regular low mood and a vocalised wish to kill himself, something which, whilst assured by CAMHS was normal in children with ASD, still worried us enormously, and not to sound dramatic, but this was the deciding factor in deciding to home educate. We knew that PDA boy's low mood was largely down to school related anxiety. We have now had almost two weeks without the usual suicide threats.

During the day PDA boy has the opportunity to do what he wants. This is mainly bushcraft, lighting fires, chopping wood, walking our dogs and cooking. In the last two weeks PDA boy as prepared a whole trout and cooked it on a campfire. We were given two pheasants by our local gamekeeper, PDA boy rose admirably to the challenge and plucked, gutted, prepared and cooked these all by himself!

Our first challenge came in the shape of a small spotty boy, my youngest developed chicken pox. PDA boy doesn't do illness in others, it's inconvenient and stops him from doing what he wants to do. I expected a difficult week, but after a tricky first day, he was able to understand why we couldn't be outdoors at all times, and was almost always patient and kind with his little brother. He has been angry, but appears to be more able to regulate his mood.

My fears about home educating have so far been unfounded. I feel like we're having an extended holiday where we are mostly relaxed.
I wake up and wonder why I feel strange, and have found that I've got so used to waking up and dreading the day ahead that it feels alien to wake up and look forward to whatever the day will bring.

I didn't expect such a dramatic change in the boy. He is still challenging, but being able to meet the challenges in ways that work are making a real difference.

It's not all plain sailing. Once again though, the difficult part is other people.

I have been assured that:

1. We're not allowed to home educate (wrong, yes we are, and there are clear government guidelines that back this up)

2. We'll make PDA boy an isolated weirdo (given the option, I'd far rather he was a happy, isolated weirdo than a miserable, angry boy having to work hard to fit in at school!)

3. What about socialising? (to quote the oft used home edder's mantra "forced association is not socialisation". PDA boy is sociable and goes out to play with friends, he goes to clubs. As he is no longer in a permanent state of high anxiety, social interactions are more meaningful. I also suspect that socialising with people outside of the competitive, dog-eat-dog environment of school where there is a strong need for people to be the same or face bullying (you're fat? That's wrong. You have ginger hair? That's wrong. You wear the wrong type of shoes? That's wrong), will mean that he can grow up without the social predjudices that are the norm in secondary school.)

4. He'll never get a job, you're setting him up to fail (I fully believe that had we left him in school, forced him in every day, PDA boy would have ended up so disengaged with the system that, like so many others, he would opt out and quite possibly go off the rails, this would then require great strength of character (which may have been depleted by years of having no autonomy and being treated as a naughty boy who must be punished - as he was in his few months of secondary) to turn things around and be a productive adult. As rates of autistic adults in employment are so low, I also think our focus at the moment should be on helping him learn to keep happy. There's no point having a job if you're so unhappy that death seems like a valid option. If he's happy anything else is a bonus.)

5. School days are the best days of your life, you're denying him that (Bullshit! I remember going through secondary school thinking that if these were going to be the best days of my life I might as well kill myself! School days for some are hideous, indescribably horrific, mentally damaging. I cannot understand why school has this romanticised image, this Enid Blyton-esque rose tinted glasses outlook, when so many people have succeeded despite school rather than because of it, when so many have memories of bullying, why are we still believing the bollocks that is "school days are the best in your life". If we can continue to give PDA boy the option to spend his days focusing on his interests, I would hazard a guess that he will have far better memories than being cooped up in a school that was so awful for him that he crumbled in a few short months.)

School is not for everyone, this is well known. I'm sure we can all remember classmates who skipped school regularly, who came out of school with no qualifications, who went through years hellbent on self destruction, some of whom didn't make it out alive. For some, school is amazing, they build relationships, they reach their potential. For some school does the opposite, they are taught through others' actions that they are worthless and useless.

We didn't fancy PDA boy's odds in a school environment, and so far, making the decision to take him out is proving to be the right choice for this family. It's not a magic wand, we can't make any guarantees about his future, we can't take away the sibling rivalry between PDA boy and our oldest (which is still a source of huge conflict), but we will do our best to allow PDA boy to grow and mature in a largely respectful, supportive environment.

We can do things our way, without having to justify our choices to others who don't get the situation, and build on the things that work and drop the things that don't work.

So far my worry about needing time alone has been unfounded. As everyone is more relaxed I'm not reaching the point of sheer overwhelm, or at least not in the way that I did, so it's easier to manage.

Despite all the concerns we had about home educating, so far it's proving to be the best decision we have made. Let's hope it stays like this!